Evening Progress Report

Ginny is doing well. She has been weaned down to 12 ppm on the nitric oxide, but still at 50% oxygen. She has also been weaned off insulin. The nurses spent most of the day trying to keep her blood pressure in a good place, her heart at a good rhythm, and getting her sedation just right. This kid is quite a fighter. She was trying to beat over the pacemaker and didn't want to take the sedation. We have convinced her that all this stuff is for her own good and everyone is very happy with her progress. We were told by one of the doctors that we should be able to close her chest in 2 to 3 days. A good, boring day.

I said I wouldn't post any more pictures of Ginny, but just to give you an idea of what it is like in here, I'm going to share this one picture with you.



This is the view from my chair. In the foreground you can see 8 of her 14 IV pumps (one was added over night) and her food pump. (Ginny has a tube that goes through her nose, down her esophagus, and through her stomach to the first part of her intestine. She gets 1 cc an hour through this tube just to keep her guts working. Maybe the hospital has some kind of deal with Pampers - I don't know.) To the left you can see her nitric oxide system and the ventilator screen behind that. Behind the IV pumps is baby Ginny. It can be kind of intimidating, but we have gotten quite an education over the last month, so it is a little less so. Also, note the Gator mobile keeping an eye on her.

An Uneventful Evening

Ginny had a good night. She has been weaned down to 50% oxygen and 16 ppm nitric oxide through the ventilator. She is still on all of her drips and we have not removed any tubes yet. The plan is to concentrate on getting her off the baby crack again - I guess everybody has a little relapse now and then - until her chest is closed. Then we can start getting rid of the chest tubes and her other support. She is progressing well as far as the swelling is concerned, but we won't know when she will get closed up for another day or two. Dr. Bleiweis should be by late this afternoon to check on her. Thanks to everyone for your prayers and support through yesterday.

The Day Of

I'm just going to keep editing this post for updates today. Keep checking back.

6:00 AM - Arrived at Shands. Ginny was sleeping peacefully. She got a little cranky around 3:00 am, but only because they had stopped feeding her at midnight and switched to IV fluids. She woke up around 6:30 and was fussy, but not too bad. They let us stay with her through shift change.

8:05 AM - Rode with the anesthesia team and Ginny in the elevator to the second floor, then came back to the NICU to pick up all of Ginny's stuff. The entire team in the NICU was sad to see Ginny go, but happy that she is one step closer to going home.

11:20 AM - Just received word from the hospital regarding Ginny. She went under anesthesia and onto the bypass without any problems. Dr. Bleiweis has fixed the PDA and is now beginning her correction - as Dr. Pitkin described it "the meat of the operation." Not sure about that choice of words, but American is his second language, so no worries.

2:10 PM - While visiting the Ronald McDonald House of North Central Florida, we got a call from the hospital regarding Ginny. Her correction is complete and they have begun to wean her off the heart-lung bypass machine. So far, everything is looking good. They have asked us to be available to speak to Dr. Bleiweis at 3 pm.

4:29 PM - In the Ronald McDonald Family Room on the 10th floor of Shands. We just received a call that Ginny is about to be wheeled upstairs to the PICU. Dr. Bleiweis will be coming to chat with us shortly. We were told it should be about an hour before we can see her, but we're prepared to wait two.

5:15 PM - Dr. Bleiweis came and talked to us about Ginny's surgery. She has been moved up to the PICU and they are cleaning her up and getting settled so we can see her. Her correction was a success, but she did have an episode of pulmonary hypertension that gave the team a pretty good scare. She is back on nitric oxide at a higher dose than she was before (40 ppm) but they will begin weaning her down today. She should be down to 20 ppm by late tonight. We should be allowed to see her shortly.

7:53 PM - This will be my last post of the evening. Ginny is doing well. She is on the ventilator again receiving 75% oxygen and 40 ppm nitric oxide. She has been heavily sedated, so she does not move or open her eyes. She has 13 IV pumps pushing 7 different medications and fluid nourishment. She has a chest tube, a central line, a tube to monitor her left atrial pressure, and an external pacemaker. She has a large gauze bandage in the middle of her chest covering the sterile gore-tex fabric, which in turn covers her open chest. It is not a pretty picture, so I won't be posting any more photos for a while. Depending on the speed of her recovery, a lot of the apparatus will be taken away starting in the next couple days. Surprisingly, Rachel and I are less stressed-out than we expected. We've had dinner and are going to try to just relax with Ginny for the rest of the night. She's had a difficult but productive day. We are hoping she has a quiet and uneventful night. Thank you everyone for your prayers and support. Ginny is feeling the love.

The Calm Before The Storm

Today we spent the day trying to relax with Ginny. We haven't posted many pictures so far. I decided today that I would share a couple. As you can tell by this first picture, I didn't really have a hard time relaxing with my baby girl. She slept the whole time while I got the best two hours of sleep I've had in a month - and she didn't even pee on me this time.


Rachel is doing her best to relax also. It is hard to think that in just a few hours our little girl is going to go through one of the most traumatic experiences anyone can go through - and she won't even remember it.

Dr. Bleiweis came by and discussed Ginny's surgery. At about 7:30 tomorrow morning, Ginny will be wheeled off to the operating room by the anesthesia team, and with any luck, we will be able to see her by 4 or 5 in the evening. It is a complex operation, but Dr. Bleiweis is one of the best - if not the best - cardio-thoracic surgeons in the country. The length of the operation will really be determined by how complicated it is to re-arrange her coronary arteries - and they won't know that until they actually get inside her chest. Pray that it is simple.

We're trying to get all the snuggle time we can tonight. It will seem like forever before we can hold her again. I held her most of the afternoon, so Rachel is getting the evening. As the time passes, it is hard not to start thinking about how difficult tomorrow will be. We've done everything we can for her, and now it is out of our hands.

We've learned a lot about ourselves over the last month. One thing that we knew, but have continued to re-learn is our sense of humor. I think Ginny's in on that, too. Shortly after I took this last picture, the three of us started to have a little "moment". Rachel and I started to cry a little, anticipating the stress of tomorrow's storm. Ginny provided her own thunder with the loudest diaper-filling you have ever heard. We couldn't help but start laughing. It just goes to show you - it doesn't matter what the occasion - poop jokes are always funny.

"You're just like your father." - Rachel

The View From Base Camp

During my almost 8 years in the Army I attended - and graduated from - the Sapper Leader Course. Sapper school is not the toughest thing the Army can do to you, but it’s pretty damn tough. There, high stress, sleep deprivation, hunger, and extreme physical exertion are the normal states of being. I won’t go through the whole thing - Google it or just watch the Military Channel. My point is, when I finished Sapper school, I thought I was pretty tough. Having never served in combat, it is probably the toughest thing I have ever done. The last month has been pretty stressful and - in some respects - I think it rivals my experience in Sapper school.

We spend most of each day at the hospital. We arrive sometime between 8 and 9 each morning, and we leave sometime between 6 and 10 each night. Although we are lucky in the fact that we sleep in our own bed each night, the sleep is not as restful as I wish it was. This adds a little to the stress.

From after the first week or so – when the roller coaster ride leveled out a bit – up until the time Ginny came off the ventilator, our days were filled with incremental improvements. Each day Ginny got a little bit better and there was something to aim for. Over the last week or so, we’ve been able to hold her and take a more active role in her care. She has been awake and alert and has even started to show a little bit of her feisty personality. That has been great. We’ve been trying to get her to breastfeed, though not yet successfully. Unfortunately, the wild stress of the roller coaster ride has been replaced by the quiet stress of anticipation.

Tomorrow will be our last day with Ginny before her surgery. We plan to spend most of it with her while she is alert. Early Tuesday morning – probably around 7 o’clock - she will be transferred from the NICU to the surgery floor. They will begin her day by getting the anesthesia going – including a paralytic – intubating her and getting her hooked up to a ventilator again. The surgery will start by opening her chest at the sternum and then hooking her to a heart-lung bypass machine. The surgeon will then correct her transposed arteries. It sounds simple enough, but he will have to disconnect (read: cut) her aorta and pulmonary artery, switch them around and stitch them back together in the correct positions. While they are in there, they will close her duct (PDA) and repair the hole between her atria (ASD).

The surgery itself will take around 8 hours. Rachel and I do not plan on spending that time in the waiting room. We are going to get away from the hospital, get some breakfast, see a movie – something other than sit and wait. The surgical team will have our cell number and we won’t be too far away from the hospital.

Ginny will go from the operating room to the Pediatric Intensive Care Unit (PICU) after her surgery. Although the correction will be complete, her chest will remain open for 3 to 5 days. She will have a gore-tex patch and a sterile dressing, as well as several tubes and lines into her chest. The lines are there to administer medications and measure the pressures in the chambers of her heart and great vessels. I’m told they keep the chest open to eliminate the need to re-open in case of complications and to avoid complications from swelling or fluid around the heart. As she starts to recover, the lines and tubes will be removed.

Once the swelling has gone down and the surgeons are ready, they will close her chest right there in the PICU. Until that happens, we’re going to limit her contact with people other than Rachel and me, and we’re going to limit our contact with other people. We’re trying to reduce her risk of infection - so, if you’re in Gainesville, please don’t be offended if we don’t invite you in.

Ginny will stay on the ventilator for about a week after her chest is closed. She’ll remain sedated to some degree until then, so we probably won’t see her very much with her eyes open for a couple weeks after tomorrow. After she comes off the ventilator, her big challenge will be learning to feed.

As you can see – even though we’ve come a long way in a month – we still have a long way to go before we can bring our beautiful girl home. We’re guessing it will be somewhere close to another month before that will happen. We couldn’t have made it this far without all of the loving support and prayers of our friends and families. Please keep praying as we head into this new phase of Ginny’s treatment. We’ve made it to Base Camp, now we’ve got to make an attempt at the summit.

Quick Update III

Ginny has had a good day. We are about to make our second attempt at breastfeeding today. This morning she might have been too tired to work for her food, but she's been sleeping all day. We'll see how this one goes. Her feeds have been increased again to 90 cc every three hours. She's a big kid. She was also taken off the CPAP and is now exclusively on the comfort flow. We've been told several times that the surgery is tentatively scheduled for Tuesday. We were supposed to have a confirmation today, but that has not happened yet.

The Science of Hope

If you’ve ever watched a University of Florida football game on TV, you’ve probably seen a commercial for UF & Shands. They use the tag line “UF & Shands - The Science of Hope.” I used to think that just a line dreamed up by the UF administration’s marketing consultant to impress the editors of US News & World Report when it came time for the annual hospital rankings. I don’t think that anymore. In an earlier post, I mentioned Ginny’s neighbor from Baton Rouge, Louisiana. Baby Joseph and his parents Max and Deborah have changed my mind. They’ve asked me to share his story with you.

Max is 34 years old and Deborah is 27. They live just outside Baton Rouge, Louisiana and both are big LSU Tiger fans. She is a first grade teacher, and he is mechanical drafter in the petrochemical industry. They had been married just over a year and were having trouble conceiving a child, so they went to a fertility specialist. The specialist did not give them much chance of conceiving on their first try, but in September they were happy to learn they were pregnant.

In January, they went for their 20 week ultrasound to find out if their bundle of joy would be a boy or a girl. During the ultrasound the doctor kept looking at one particular area of the baby. He didn’t say anything. “Is it a boy or a girl,” they finally asked. “A boy,” the doctor replied, “but there is a problem.” They found that Joseph had a condition called Congenital Diaphragmatic Hernia (CDH). CDH is a life threatening birth defect where the diaphragm does not completely form, allowing some of the contents of the abdomen to protrude into the chest and hinder the normal growth of lung tissue. CDH affects about 1 in 3000 babies, and the national survival rate for babies born with CDH is between 50% and 65%. (www.realhopeforcdh.com)

The doctor encouraged them to “consider your options. You are only 20 weeks.” They understood that he was telling them to have an abortion. For them, that was not an option. The next day they traveled to another specialist at a university hospital in New Orleans. He gave the same prognosis. They were not given much hope. The only way their baby would survive is if he was born at a hospital with a CDH center. They were told even then he didn’t have much chance.

Max and Deborah immediately began researching hospitals with CDH centers. There are only five centers in the country that handle these kinds of cases. They first visited the University of Florida and Shands Hospital. Deborah underwent a battery of tests and then met with Dr. David Kays. Dr. Kays is an Associate Professor and Chief of Pediatric Surgery and arguably the best doctor in the country for the treatment of CDH. He met with them and explained is approach to treatment and gave them an 80 to 90% chance that Joseph would survive. Finally someone had given them a reason to be hopeful.

They also traveled to a children’s hospital in Philadelphia. The doctors there gave them a best-case chance of survival of 40% and were not very encouraging. Their decision had been made for them. Joseph would be born at Shands.

At 27 weeks, Deborah was diagnosed with polyhydraminosis – a condition where her body created too much amniotic fluid. By 33 weeks, her body had created over a gallon of excess fluid. The extra fluid could send her into pre-term labor and had to be removed by a procedure called amnio-reduction. Because of the risk of pre-term labor, and because Joseph’s chances of survival were greatly diminished if he was born before 39 weeks, Deborah and Max moved to Gainesville for the last 5 weeks of their pregnancy. During that 5 week period, Deborah experienced almost constant contractions and pain, and they made 7 or 8 trips to the emergency room thinking she was in active labor.

Joseph was delivered by Caesarian section on June 1st at 9:05 a.m. He weighed 7 pounds, 14 ounces, and was 20 ½ inches long. Immediately after his birth he was placed on the ventilator and brought to the NICU. He moved into the bed space right next to Ginny. Deborah and Max weren’t able to see him until 4:30 that afternoon.

The first time you see your baby in a NICU crib - with the wires and IV’s and ventilator tubes, and the constant beeping from monitors and IV pumps – a wave of emotion crashes over you, almost to the point of physically knocking you to your knees. It is not how you envisioned meeting your child, and the feelings border on devastation. We were there when Joseph finally got to meet his parents, and it was no different for them. It is an experience I wish happened less frequently, but we have seen it several times over the last month.

On June 4th – when Joseph was just 3 days old – Dr. Kays and his team performed surgery to repair Joseph’s hernia. His diaphragm was repaired using a gore-tex fabric. Then his digestive tract had to be reconstructed – including rearranging his stomach, liver, intestines, and spleen into something resembling their normal positions. To me that sounds hard enough on a full grown man, but they did it on a 7 pound boy.

Joseph has been recovering well. On June 12th he was taken off of the ventilator and he has been moved from NICU 3 to NICU 2 – a good sign. He is feeding and should be well enough to leave the hospital in just a couple weeks. Deborah and Max have become friends of ours through our shared experience in the NICU. Ginny and Joseph are planning play-dates that coincide with the LSU vs. Florida football weekend. During that game, we won’t be so cynical about the commercials for UF & Shands.

Waiting Game

Ginny is doing really well. We have talked to the surgical team a couple of times in the last few days and the plan remains for Ginny to have her surgery on Tuesday the 29th. Until then, we are just chillin'. Ginny is still alternating between the CPAP and a different device called Comfort Flow. It is similar to the nasal cannula, but it gives her a little more pressure support. We've changed the schedule so that now she is alternating every six hours instead of every four. She is learning to breastfeed, although reluctantly. Small steps, but all in the right direction.

Take II

Today Ginny is back to doing sprints. She's had a good day today. We're going to try to put her on just the nasal cannula tomorrow morning sometime. We're also going to focus our attention on breasts - and we will try to feed Ginny, too. It's going to be a long day for both of us, but I think I might enjoy it more than she will.

The Grind

Today was another "sideways day". During rounds this morning the plan was for Ginny to come off the CPAP and go with just the nasal cannula. She had other plans. Rachel had held her for a little while and then went out to the waiting room for something. When she put Ginny back in the crib, she was pretty fussy. I decided I would hold her to try to console her for a little while. It didn't console her much. Her sats dropped to the high 60's or so and she got a little rash on her chest. We put her back in the crib and started her back on the CPAP. We changed her diaper and her bedding, and after a short while, her sats were back in the 90's. We're not exactly sure what that was all about, but one theory is that she is allergic to my laundry detergent. I guess I'll stop doing laundry. She spend the rest of the day a little fussy, but otherwise great.

The surgeon came by in the afternoon and told us that he has tentatively scheduled Ginny's surgery for Tuesday (6/29). Very good news, but keep in mind we said tentatively. I don't think she has to come all the way off the CPAP, but that would be good. She also has to stay infection-free, and it would be really good for her if she could learn how to feed. Like everything else associated with parenting, it's a marathon, not a sprint.

Why?

The first few days of Ginny’s life were unlike anything I had experienced in my life. The word surreal seems a bit cliché, but I cannot think of another way to describe it. When I entered the operating room for Rachel’s C-section, it was as if I was watching a movie of someone else’s life. This wasn’t actually happening to us.

When we saw Ginny having trouble in the first few minutes of her life, I could see the worry in Rachel’s eyes. We knew something was wrong, we just didn’t know what. I remember looking at her as tears began to run down her face and telling her, “It’s out of our hands now. She will be OK.” We had no idea what was going on, but I knew that everyone around us was doing everything they could to help her.

Alone in the waiting room at Shands, time seemed to stand still. There was no one else in the room, the television was off and it felt like even the clerks behind the desk had disappeared. I was alone with my thoughts. I kept thinking about how I would break the news to Rachel if Ginny didn’t make it. I couldn’t tell her on the phone. I would have to get someone to drive me back across town to NFRMC to tell her in person and leave Ginny alone at Shands.

The doctors would come out to the waiting room periodically to give me updates on Ginny’s status. At one point, they told me that Ginny would have to have a treatment called extracorporeal membrane oxygenation (ECMO). ECMO is a high-risk treatment and the doctors tried (successfully) everything they could to avoid it. As they explained to me her problems and the appropriate treatments - that night and over the following days - I felt a sense of serenity. Discussing the technical medical issues put me in a little more comfortable place, though to them I’m sure I looked anything but comfortable or serene.

Rachel and I have asked a lot of questions in the weeks since then – questions about anatomy and physiology and about the treatments for and characteristics of her conditions. The one question I have not asked is “Why?” I don’t mean “why” in the sense of “What are the medical causes of Ginny’s sickness?” I don’t mean, “Why didn’t we know about this before?” Those kinds of questions are normal and need to be asked. I mean “Why us? Why - when we took such good care during pregnancy - is Ginny so sick?”

Rachel had a textbook pregnancy. She had great prenatal care. She took good care of herself. She didn’t drink, smoke, or do anything to endanger Ginny’s health. Still, Ginny is sick. Asking why won’t make her better. Asking will only lead us to feeling sorry for ourselves. There really is no answer to “Why?” Ginny doesn’t need parents who feel sorry for themselves. She needs parents that are willing to put their feelings aside and do what needs to be done to make her better. We’re trying our best to be those parents.

Yesterday was a good day for Ginny. Today was also. She is still doing sprints – alternating between the CPAP and nasal cannula. She tried again today to breastfeed and is getting closer to a latch each time. Despite all she has been through, she is not really a fussy baby. She cries when she’s moved or when you change her diaper or when she’s hungry - almost normal baby stuff. The surgeon stopped by and was very happy with her progress. He told us he was hoping for surgery early next week and he would have a date for us some time tomorrow.

Yesterday was not, however, a good day for Ginny’s parents. Late in the afternoon, we were brought face to face with the reality that not every baby in the NICU will make it home for a full recovery. Some babies are just born too soon and too small to survive. As I tried to deal with what was happening around me, the question “Why?” came and kicked me squarely in the gut. Why do I get to take my baby home, while another dad doesn’t? Unfortunately, that question doesn’t have an answer either.

Please keep all of the NICU families in your prayers tonight.

Sometimes Boring Days Are Good

Ginny is doing great. She's eating and crying and filling diapers - all the things that babies should do. She had lots of visitors today, and she held up well through all of them. She's still doing sprints - four hours on the CPAP and four hours on the nasal cannula - and doesn't seem to notice the difference. Let's all hope she keeps this up through next week.

On Holiday

Ginny is into her third day off of the ventilator. She likes it just fine. She is still officially on the CPAP, but she's doing what Dr. Baines calls "sprints." She was taken off the CPAP at 3:00 this afternoon and is getting oxygen through nasal cannula. She'll be off the CPAP for a few hours and then we'll put her back on for a while. We just want to see how she tolerates it. So far she's doing great. After some time we'll know if she can stay off the CPAP and just use the cannula for extra oxygen. She even tried to breastfeed a little. She got a few drops of mamma's milk and then fell right asleep and started drooling. Jagermeister does the same thing to me. She didn't actually latch on, but she'll get the hang of it eventually.

So Ginny will stay on her ventilator holiday for a few days - most likely all of next week - until the surgeons feel like she is well enough to have her correction. We really feel like we've come such a long way. We have, really, but Ginny still has a pretty big obstacle to overcome. We'll enjoy her progress for the next week and hope we can stave off any infections that might put her at risk during surgery. Then we'll face the next challenge.

Quick Update II

Cardiology stopped by late in the afternoon to check Ginny's chart. He mentioned that surgery might not be until the week after next, but the real call would be up to the surgeon. Ginny had a good day. She is still on the CPAP with 30% oxygen, but loving it with 90% (+/-) saturations. Rachel held her all morning and I held her most of the afternoon. Tonight around 9:00 she went for a routine pre-surgery cranial MRI. We should hear about the results tomorrow. Thank you everyone for your thoughts and prayers. We're (almost) half way home.

Dirty Tricks

A few days after we got here to the NICU, another family moved in next door. They are from just outside Baton Rouge, Louisiana, but they are here because Shands is the best hospital for their baby's particular condition. We've become pretty good friends with them. You have probably guessed that they are die-hard LSU fans stuck in Gator country. We joke with them constantly, but they are good sports and really great people.

Last night Ginny decided she wanted to play her first practical joke. The other baby has a little Noah's Ark mobile that plays a lullaby, while Ginny has a Florida Gators mobile that plays our fight song. Ginny wanted us to replace a little giraffe that looks like this:
with a Gator that looks like this:

This morning when we came in, it was carnage. This is what we found:

That's OK... let's just wait until October 9th. Then we'll see... Ginny can't wait for football season.

A Great Day

Ginny is 20 days old today. That's almost 3 weeks that she had a tube down her throat to help her breathe. The doctors removed her tube today. She still has a device on her nose called a CPAP (Continuous Positive Airway Pressure) that gives her a mix of air with 30% oxygen, but no tube. After letting her rest a bit and checking her blood gases, Rachel and I got to hold her for the first time in her life.

I'd like to be able to give you some eloquent description of what that was like, but I can't. There just aren't words for it. If you've experienced it with your own children, you know what I'm talking about. If you haven't, I could write 100,000 words about it and you still would not be able to comprehend.

Rachel held Ginny for about 30 minutes before I got to hold her. Our good friend and wedding photographer Gregg came to the hospital and was allowed to photograph us holding her for the first time. I think the first thing I said to her when I got her in my arms was, "I love you, Ginny," followed quickly by "Dammit kid, you scared the crap out of us!" I held her for about 30 minutes and I don't think I took my eyes off of her the whole time. I've handed her back to Rachel, and they're both as happy as can be.

Ginny will not be able to breastfeed while she is on the CPAP. She should only be on it for about 24 hours until the switch her to the cannula (nose tubes) for oxygen. I think then she will able to go straight to the tap. Tomorrow I expect cardiology to come by and check on her. Hopefully then they will be able to give us a firm date for surgery. In the meantime, we're just enjoying Ginny.

I'm sure Gregg will be posting some pictures at some point in the near future. If you'd like to see them, go to Angel & Gregg's website: www.photography35.com Angel & Gregg photographed our wedding and have become really good friends. If you have a day that you would like to preserve in photographs forever, call them. They are great people and really good photographers. Even if they are Yankees fans.

Ventilators and Vacuum Pumps

The most common reaction I received from friends, family, and coworkers to the news that I would be a dad was "Your life will never be the same." Intuitively we knew this. Our lives as we knew them wouldn't come to an end, they would just require a little more planning, and of course we expected with time our priorities would change. Obviously there would be no more spontaneous road trips or wild benders during football season. We were OK with this. You have to grow up sometime - I guess - no matter how reluctantly. Don't get me wrong - I'm incredibly happy to be a dad. There are just some changes that will take some getting used to. It's not the obvious changes either. They kind of sneak up on you.

This morning one of those changes smacked me in the face as I tried to straighten up our kitchen. The kitchen is one of my favorite places in our house, after the library / office. Cooking is one of my hobbies, and we like to have big groups of friends over for dinner - though sadly that is getting less frequent as more of our friends move away from Gainesville. It is fair to say that Rachel and I have a little bit of a gender role reversal when it comes to the kitchen. On several occasions I have found myself standing in the kitchen cooking dinner only to look out the window and see Rachel hard at work on some project or another with my power tools. It's not for everybody, but it works for us.

So as I stood there this morning organizing the clutter that has accumulated on the counter from days at the hospital and nights of just crashing, I realized what has become of my kitchen. It is now a room dedicated almost exclusively to the pumping of breasts. There are large bags of serving-sized milk bottles, boxes of freezer storage bags, and little test strips so Rachel can check the milk for alcohol - we don't need Ginny sucking down White Russians just yet. The freezer is so full of 5 oz bags of breastmilk that there isn't room for much else. The dairy jokes that were so funny a month ago seem to have lost something with Rachel, too.

I feel bad for Rachel because what should be a special bonding moment with Ginny has turned into something quite detached and mechanical. Her life for the moment revolves around pumping. I'm sure she would be much happier using a power tool other than a vacuum pump. Which leads us to the good news.

While we don't have a date for surgery just yet, the neonatology team did their rounds this morning and are very pleased with our little princess. While we have increased her sildenafil just a bit, she is doing great. She is way down on her ventilator settings and the plan is to take her off the ventilator and remove her tube some time tomorrow. This is wonderful news. We should finally get to hold her tomorrow afternoon, barring another one of her tantrums. Pray that she doesn't throw a fit about having to actually breathe on her own, or the tube will have to go right back in.

I'm trying not to think too much about what the experience of holding her will be like because I'd like it to just happen. Needless to say, the anticipation is killing me.

Monday Mornings

The neonatology doctors have completed their rounds this morning. Everyone is very pleased with Miss Ginny. She has been off the nitric oxide since Friday night at about 9. She has not looked back since then. She has been weened back a little bit on her Versed (sedative) and she is receiving 32% oxygen through the ventilator. (She only has to go to 21% before she's breathing room air.) Right now she is just about able to be extubated, though we are waiting on cardiology to make a decision about removing the tube. We expect they will be around sometime today to fill us in on the plan.

We are about at the mid-way point for this particular crisis. We've had more than a few really scary moments along the way. Right now is a little lull in the excitement, but another roller coaster ride is coming up. Although they've been doing this surgery on babies for decades, the thought of letting them open up my daughter's chest to rearrange the plumbing is a bit scary to say the least. We are comforted by the fact that we have one of the best pediatric cardio-thorasic surgeons in the country doing the work. Cincinnati Children's Hospital has a great graphic that shows what he will have to do to fix Ginny's heart. You can find it at:
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/graphicsummaries/transwf.htm

It is pretty awesome to think that they will perform that surgery on a heart that is only about 3 cm in diameter - just a little over an inch - absolutely amazing!

Back on Track

Congratulations Andre and Megan! As I said in my toast, we hope you have a long, happy, and prosperous life together.

We made it back to Gainesville from St. Pete Beach at around 1:15 this morning and went straight to the hospital. We found Ginny asleep, with oxygen saturations in the 90 percent range, without any nitric oxide. She is such a beautiful child. Unlike her mom and dad, she decided to do something productive while her parents were out of town.

We are dragging ourselves out of bed and down to the hospital to spend the day with Ginny. In the next couple of days we should know something about when her surgery will be, but we're guessing no sooner than the end of the week or early next week. We've cleared a big hurdle. Thank you all for your prayers and support. The next hurdle will be surgery, and then I'll have to start changing her diapers on my own. Somehow I don't think that hurdle will be too bad.

Wedding Weekend

Our good friend Andre is getting married this weekend. We thought we had everything all planned out as far as that was concerned. We were going to bring Ginny to St. Petersburg Beach and she was going to hang out with Grammie and Grandpa while I was giving a heartwarming toast to Andre and his beautiful bride Megan as Rachel sat smiling in admiration next to me. Then we would enjoy a weekend at the beach to relax with the little bundle of joy.

Life doesn't always work out the way you plan it.

We are going to make it to Andre's wedding and help him celebrate the best day of his life thus far. (Andre - You'll probably have at least one more day that is just as awesome. Trust me.) We'll go straight from the hospital to the rehearsal, wedding tomorrow, and straight home after the reception. Ginny is stable and in great hands, and we could use a few hours away from the hospital. Hopefully while we're gone she can work on kicking the nitric habit.

Of course, knowing her gene pool, she'll probably throw a party in the NICU while her parents are out of town.

She's a Pretty Big Deal

Ginny has had quite an afternoon. Her first celebrity visitor was Storm Roberts, a local radio personality from WKTK. Storm did a quick interview with us for the August fundraiser for Children's Miracle Network. Over the years Storm has raised millions of dollars for CMN and we hope this year is no different.

After the quick interview Rachel and I went back to the family lunch sponsored by the March of Dimes. There are more families now, as we've had quite a few babies move into the NICU over the last week.

About 3 o'clock we had our most exciting visitors. It started with a camera crew from Cox Communications escorted by the March of Dimes folks. Then came Gator Gymnastics Head Coach Rhonda Faehn and Assistant Men's Tennis Coach Jeremy Bayon. They shot a TV spot to promote the UF March for Babies coming up in November. They also recorded a "Let the Gator Growl!"

For those of you that aren't part of the Gator Nation, Gator Growl is the world's largest student-run pep rally that happens at homecoming each year. About 30,000 students, families, and alumni attend. There is usually a musical act and a comedian, along with the athletic teams and student performances. We've had Bill Cosby, Bob Hope, Robin Williams, and a lot of other big names perform at Gator Growl. The show opens with a recording of different celebrities proclaiming "Let the Gator Growl!" They've included presidential candidates, supreme court justices, actors, comedians, authors, distinguished alumni, and all kinds of celebrities - local and national. This year that list will include none other than our Ginny Lee. We're pretty excited about that, but the most important part of all that is raising money to help March of Dimes.

Now, I said those were the exciting visitors. The important visitors came right after the camera crew left. Dr. Fricker (cardiology), Dr. Baines (neonatology), and Dr. Maya (cardiology fellow) - the real rock stars - came down to discuss the plans to get Ginny to surgery. We were very encouraged by the news, even though it wasn't exactly what we expected. We're going to try to ween her off the nitric oxide again tomorrow. If she tolerates it, that's great. If not, we'll just keep trying about every 48 hours until she can. It might take a while, but she's going to be fine. Good thing, because she's a pretty big deal.

Kicking the Habit

Ginny's condition hasn't changed much from yesterday. Today was a kind of "sideways day." After the roller coaster of the first few days, she's been improving by varying degrees each day, but always improving. We had gotten used to that gradual degree of improvement. Today, she didn't really improve, but she didn't really get worse either. Although we're happy that she is getting better and always optimistic, when we're in the moment we get a little discouraged that we didn't see any improvement today.

The staff in NICU 3 are getting a kick out of Rachel's "baby crack" analogy. Overnight we tried unsuccessfully again to ween Ginny off the stuff. We brought her back up to 5 ppm, and increased her dosage of sildenafil as well. Her response was mixed. Her oxygen saturation will do great for most of the day, but she has moments where they will drop into the 60's. We'll try again tomorrow to bring her off the nitric oxide and see what happens. Getting over that last little hump will be tough, so keep praying.

In addition to weening Ginny off the nitric, we've got a pretty big day tomorrow. Some of the coaches from the University of Florida athletic department will be coming to the NICU to take some pictures with Ginny for the March of Dimes. Ginny is going to be on a poster for their fundraising drive coming up. I'm not sure exactly who the coaches are or when the poster will be released, but I'll let you know. We'll also be recording an interview for the Children's Miracle Network fundraising drive coming up on the local Gainesville radio station.

Despite how stressful and emotionally draining this experience has been so far, Rachel and I have not lost sight of how blessed we really are. We've got good jobs at a company that has shown a great amount of support for us and provides us with an excellent benefits package. Without those benefits, I'm not sure we would be keeping our sanity as well as we are. We've also got great families and great friends. So many people have given blood, brought us lunch or dinner, done our laundry, mowed our yard, and most importantly, kept us in prayer. Not every family with a child in the NICU is that blessed.

While Rachel and I are focused on Ginny's recovery, it is impossible for us to ignore the need of those around us. A lot of you have asked how you might be able to help. We are exploring the idea of creating some kind of charitable foundation to help other NICU families. Until we get that figured out, if you would like to give we would highly recommend the March of Dimes and Children's Miracle Network. Both of these organizations have been very supportive, though in different ways. We would also recommend the Ronald McDonald House of Gainesville.

Thank you everyone for your thoughts and prayers, and thank you Kat and Bill for dinner. If you are in Gainesville, please visit The Red Onion Neighborhood Grill. It's a local business run by wonderful people. The food is good and the beer is cold. And man did I need that beer.

Bumps in the Road

I've used the metaphor that Ginny's recovery will be a long road. Along that road we'll have some bumps, and today was one of those little bumps. Ginny has improved a lot over the last week. She is stable and has shown us how she can be so resilient and so stubborn at the same time.

Ginny's been weened off of all but 3 medications - which she will stay on until after her surgery. The same goes for the 35% oxygen she is receiving from the ventilator. She could be receiving that oxygen without having a tube down her throat if she could just kick the nitric habit. She has been getting nitric oxide through her ventilator at 1 ppm since early late Sunday. We tried to get her all the way off the nitric yesterday evening, but she wasn't having any of that. We tried again tonight and were also unsuccessful. The respiratory techs say that going from 1 ppm to none is the hardest step. Rachel calls it baby crack. We will try again tomorrow to get her off the stuff. We've also increased her feedings to 20 cc every 3 hours. She's even gained a little weight.

Kicking the nitric habit will be a big step for her. Her pulmonary hypertension is largely under control. If we can get Ginny off the nitric, she will be able to come off the ventilator (extubated). We'll then be able to hold her and Rachel will be able to breastfeed her. After about a week of that kind of rest and relaxation, she should be ready for surgery. It all depends on getting her off the nitric oxide. If there is something you want to pray about, pray she can just say no to the NO.

We would like to give a huge thank you to everyone at Jones Edmunds that donated their vacation time so that I can spend this time with Ginny. At last count my co-workers had donated over 250 hours of vacation time to me. I am eternally grateful and can only hope that someday I will be able to pay it all back. I do hope to get back to the office soon - mostly because that will mean that Ginny is well on her way to a normal kid's life - but also because I'm afraid the atmosphere in "the shoe" has become all too pleasant in my absence.

Making Strides

We are almost to the end of another good day. Ginny has been weened down on or off almost all of her medications. Her feeding has been increased to 6 cc every 3 hours. Her oxygen saturations are consistently above 80%. The ventilator is supplying her with 35% oxygen and only 4 ppm of nitric oxide. Cardiology would like her to stay at 35% Oxygen until her surgery, but they could extubate her before the surgery if she can tolerate being off of the nitric oxide. If not, they may extubate her, give her the oxygen through two small tubes in her nose, and replace the nitric with sildenafil to keep her pulmonary blood vessels dilated. In case you don't have your Physician's Desk Reference close by, the brand name of that drug is Viagra....

Normally this is where I would insert completely inappropriate humor. I'll refrain, but only a little bit. The good news is that if her breathing lasts for more than four hours, we won't need to seek medical attention.

Yesterday I got to change my first diaper. I'm a Civil Engineer. I've been to dozens of wastewater treatment plants, responded to sewer line breaks, and seen my share of gross stuff. I have never seen a turd like that before in my life.

Our whole parenting experience has been very stressful thus far. Despite all the stress, we've really had very little to complain about. Today was probably the first time I went on one of my somewhat infamous rants. (The ABG returns.) Here at Shands, they have some of the most intelligent and talented people in the world working in the building. The important part is in the building. Across the street in the parking garage, not so much.

It seems that since Rachel and I were both students at UF at one time and actually possessed a parking pass, our license plate is forever listed in the Parking Services database as a student vehicle. We got a parking ticket on Friday for parking in a restricted area. "This area is for medical visitors only," the ticket read, along with the fine of $30. Today I assisted the Parking Services people by putting a large sign in the window that read: "MEDICAL VISITOR: My child is a patient in the NICU 3." Despite this helpful assistance, I got another ticket today. Of course, the note on the front seat instructing Parking Services to perform a physical impossibility probably did not win me any friends.

The conversation on the phone was considerably less than productive, but we'll get it all straightened out eventually. If this is the worst thing that happens when we're here, I won't complain one bit.

Quick Update

We're home from the hospital pretty early tonight. We managed to avoid the shift-change meltdown, so we think we've got this kid figured out (at least until she's a teenager). A very good day.

I hope I didn't overstep my credibility with the "my kid as a metaphor for world peace," but we really have a lot of amazing friends and family, and we just want to share that with everyone. We still have a long road ahead of us, so please keep Ginny in your thoughts and prayers.

Ginny's Dream Today

Ginny is doing great this morning. She doesn't really like the night shift though. Last night, shortly after shift change, she threw another one of her tantrums, dropped her sats and just made everyone worry. After that she was fine. We did get a call shortly after midnight from Dr. Molly that Ginny had a slight fever. They started her on some antibiotics just in case and took a few cultures. She had another big day yesterday, so it could just be all the excitement combined with the PGE (it has a tendency to raise body temperature).

Yesterday the nurses put in a peripherally inserted central catheter (PIC line) - an IV in her arm that goes through the vein almost all the way to her heart. This will help get medications to her body quicker and it won't go bad like regular IV's do. It will save her a lot of sticks from needles over the next week or so. It also enabled Dr. Molly to remove her umbilical catheter (UVC). She has been taking mama's milk at 1 cc every 3 hours, so hopefully she'll start packing on the pounds. They weened a lot of her medications yesterday, and then again this morning. We're making great progress.

Rachel and I have been doing our best to keep track of all of the people that help us through this difficult time. It's tough because a lot of you are anonymous - some on purpose, like the phantom lawn-mowing guy. It will be impossible for us to know everyone who has helped, but we have kept the names of those that we know about. Regardless of whether we know your name or not, we thank you for all you have done and hope you will continue to keep us in your prayers.

We keep track of the names we know in a little notebook. I noticed something about them the other day. They are all different kinds of people. There are Christians, Jews, Muslims, and Buddhists. There are white people, black people, brown, red, and yellow people. There are gay people and straight people. One of her doctors is an Indian man, and another a Filipino woman. I know Remi Bald Eagle is out there saying a prayer for her. He's an original American and an American hero too. We’re all really different, but at a time like this, the differences don’t really seem to matter. In a lot of places in the world right now people are focused on the differences and forget that we all want the same things. We all want our kids to grow up happy and healthy, to get a good education and be productive members of society, and to help their neighbors when they’re in need. We’re really not that different after all. I hope Ginny grows up in a world where she’s judged by the content of her character - and nothing else. She’ll see the great example that all of you have set for her.

Saturday Morning With Daddy

I'm really not kidding about the roller coaster. Yesterday was a good day for Ginny, but last night around the time that the nurses change shifts (7 pm), Ginny needed to be suctioned from the secretions in her lungs. As I've said before, she really doesn't like this. Her sats dropped and she had trouble getting them back up. She was weened off some of her sedatives earlier in the day, so she was a little more awake. Rachel saw her open her eyes several times, but I didn't see it until almost midnight. Sadly when I did see her open her eyes, she was saying "Help me,Daddy". The nurses and respiratory techs had trouble suctioning her, but they finally got three pretty substantial plugs to work themselves free. The pediatric Fellow described them as "really big goobers." Apparently that is an actual medical term.

When we went back to the house a little after midnight, Jenny and Matt Z were there with my sister Alissa. It was good to see them all. Jenny is a nervous-cleaner. When she gets anxiety, she cleans. Luckily she got her anxiety at my house. Thanks Jenny, you rock!

We came in this morning with quite a bit of apprehension about what we would find when we got here. Luckily, our kick-ass nurse Jen was here and Ginny's numbers were excellent. She had suctioned Ginny just an hour before we got here and Ginny had recovered nicely. Just a few minutes after Auntie Alissa got to meet Ginny, Dr. Fricker came by and gave us some good news. He liked the way Ginny was progressing and decided to start weening her off the PGE, which is the main culprit when it comes to her lung secretions. Great news.

This morning I finally got to see Ginny open her eyes and look at me with something other than fear in her eyes. She's trying to figure out what's going on and why all these contraptions are hooked to her. She has beautiful dark eyes. It was a feeling like no other. I think Saturdays are going to be daddy days from now on.

Thank you all for your loving support and prayers.

Short Progress Report

Ginny had a pretty good day. She is back to 15 ppm of nitric oxide and 60% oxygen from the vent. She is doing a good job of trying to breathe on her own. They have reduced the dosages of some of her medications and are talking about weening her down on the others over the next day or so. The great news is that she did have two feedings of breast milk today. Ginny's recovery is going to be a long process, so I guess we will have a lot of days like this. As I said before, she has a knack for following her good days with pretty scary ones, so let's pray that we've turned the corner. Thank you all for your prayers and support.

Roller Coaster Rides

Ginny is doing well this morning. She is 8 days old today and has already developed quite the talent for scaring the crap out of her parents, as well as some very talented doctors.

Yesterday the team discussed whether or not we should perform the septostomy that afternoon, or wait until Monday. After consultation with Dr. Fricker - one of the best pediatric cardiologists in the country - we decided that Thursday was the day. Ginny caught wind of this plan and decided she would make it a little more interesting.

Cardiology had two other procedures to do before they could get to Ginny, so we knew it would be late afternoon. About 2 o'clock Ginny decided to spring her plot. Her oxygen saturations took a dive and she turned blue. The doctors and nurses immediately started working to get her sats back up. They took the ventilator off temporarily and were using the bag to breathe for her and cranked her oxygen up to 99%. She gave them a run for their money. Although Dr. Baines remained calm and professional on the outside, and the entire team did a great job, by the time her sats came back up everyone was clearly rattled.

We really didn't have much time to recover from that scare when the cardiology team showed up to do the septostomy, with the anesthesia team close behind. They explained the procedure. They would insert a line in Ginny's femoral artery and run it up to her heart using echocardiography to guide the way. Once at her heart they would inflate the balloon at the end of the line and use it to enlarge the ASD. They thought her ASD was about 7 mm, and they wanted it to be a little bigger than 1 cm. Making that hole bigger will allow more mixing of oxygenated and unoxygenated blood within her heart.

So far as we can tell this morning it has really helped. Her oxygen saturations have remained high even as we have weened her down to 60% oxygen through the vent. Her color is much better. Her hands and feet still have a little purple, but mostly she is a beautiful shade of pink.

Wednesday was such a good day, and yesterday was very stressful. It really is like a roller coaster ride with the ups and downs. It's not like one of those new high-tech roller coasters, either, with their fresh paint and safety features. It's more like the rickety old wooden coasters with bolts loose and a clanging chain and a rusty piece of metal for a seat restraint. Kind of makes you question your own sanity while you're on it, but its worth the ride.

Extra Virgin!?!

Ginny is having the procedure to enlarge her ASD as I am writing this. We shall see how she does.

We are planning on breastfeeding Ginny. Rachel has been faithfully pumping since she delivered Ginny on Friday. The milk is stored here in the NICU in the freezer, and whenever Ginny decides to get well enough to eat, they will feed it to her through a tube until she is well enough to take it from the tap. Rachel tells me that pumping is considerably less than comfortable. She discussed some of her discomfort with the lactation consultant here at the hospital. (Yes, Matt Z, that is a real job. No, you can not apply for it.) The lactation consultant suggested that olive oil might take away some of the discomfort. She also figured out how to engineer a "hands free device" using one of her old sports bras. "This is great!" she says, "Now I can check my email and surf the internet while I'm pumping."

Each morning when I get out of bed, the second thing I do is go to the computer to read my newspapers and see what happened in the world while I was asleep. This morning when I got up, there was a cruet of olive oil right next to the keyboard... so when you come over to our house for dinner - be careful which salad dressing you ask for.

Every Day Gives a New Challenge

We just finished lunch provided by Gator Domino's and the March of Dimes. Lots of people are here sharing stories about their babies. We're not alone and these families have been through a lot, so when you go to pray for Ginny, remember them too.

Part of Ginny's cardiac defect is an Atrial Septum Deviation (ASD). ASD is a hole in the wall between the left and right atrium. With all of Ginny's other problems, the fact that she has a medium-sized ASD is actually a good thing. It allows oxygenated and unoxygenated blood to mix, counteracting the TGA. This afternoon she will have to undergo a procedure that will enlarge her ASD to make sure it stays open long enough for her pulmonary hypertension (PPHN) to clear up before the TGA repair surgery. They will insert a catheter into her leg, run it up to her heart and inflate a balloon in the ASD to stretch it a little. As sensitive as she has been, there was some debate amongst the team about whether we should do the procedure today or wait until Monday. With consultation from one of the best pediatric cardiologists in the country, we decided that the procedure had to be done today. It is a risk, given her sensitivity, but the benefit could be a great increase in her oxygen sats. If for some reason the procedure aggravates her PPHN, we may have to go with a much riskier and invasive treatment. We have not yet spoken with the cardiologist that will perform the procedure, so we have a little time. Keep us in your thoughts and prayers as we face this new challenge.

On Sunrises and Suction

Ginny is doing well this morning. Although she didn't make the progress we wanted, she is definitely improving. The oxygen she is getting through the vent is down to 70% - not quite the 60% we were shooting for, but her sats are good and the nitric oxide is down to 15 ppm from 20 ppm (our goal is to get that to zero). Unfortunately, the cardiac medications have the side effect of creating excess secretions in her lungs which have to be suctioned out every so often. She does not like this at all. Each time she gets suction she drops her sats and lets everyone know she is not happy. But each time she does it, the drops get less in severity and she recovers quicker, which is a great sign.

About 8:20 this morning I got a call from Dr. Molly, the resident on duty here at the NICU. When the phone rang my heart stopped, but she was very pleasant and just wanted me to know that cardiology would be by this morning and wanted to talk to us about what the plan is to prepare Ginny for her surgery. We were here by 8:50, despite having answered the phone in my underwear...

It's now about 9:45 and cardiology still hasn't made it by, though I see some of them here in the ward, so they should be by shortly. I will give everyone an update later today. Thank you everyone for your prayers and support.

Good End to a Long Day

We have finally made it home from a long day at the hospital, but we really feel good. Ginny has been off the oscillator and on the traditional vent since about 11:00 this morning and is making progress. Except for a little tantrum this afternoon, her sats have been good and the doctors are slowly weening her off the nitric oxide they have been giving her through the ventilator. When we left they were giving her 75% oxygen, and they plan to ween her by about 1% per hour over night until they get her down to 60%. The team will reassess her in the morning and make a plan for the day's treatment. The surgical team made a consultation at the end of the day and reassured us that they were ready for Ginny whenever she was ready for them. With the changes we made to her ventilator, we are one step closer to bringing her home.

We are so very thankful for all of the people at Shands. We've talked to so many world-class doctors, nurses, and other practitioners - without exception each one of them has been so incredibly friendly and professional. Each one takes care of Ginny as if she were their own. They include us in all of their discussions about her treatment and do a great job of answering all of our questions, no matter how many times we ask the same question, no matter how trivial the question might be. (At one point my question to Ginny's nurse Tony was "What day is it?" It had been a while since I had slept.)

Adding to the good news about Ginny was the fact that I received news today that I passed the Professional Engineer exam that I took in April. A great career milestone. Overall, a very good day.

Please continue to keep Ginny in your thoughts and prayers. Whatever you are doing, its working!

Three Hours and a Million Thanks

Its been three hours since Ginny was switched to the traditional ventilator, and so far, so good.

There are already easily thousands of people that we need to thank for their support. I'll never be able to name you all, but here are two: Jen & Steve McElroy.

I was all set to go give blood yesterday morning as a direct donation to Ginny. She'll need a few units of blood when they do her surgery to correct the TGA. I got the paperwork done Monday, but I couldn't give until Tuesday. Ginny is type A +, and so am I. And, I'm negative for Cytomegalovirus (CMV). You might be CMV positive and never know it. Its not a big deal, except you can't give CMV positive blood or blood products to infants or other immuno-depressed patients. When I got to the blood bank, I discovered that I wouldn't be allowed to donate for a year. Because our trip to Vietnam in January included trips out of Saigon and into the countryside, the risk of malaria was too great.

Jen and Steve were both compatible blood types and CMV negative. They volunteered and had given blood before the sun went down. In addition to the prayers and meals, if you'd really like to help, you could give blood. If you're CMV negative, maybe Ginny can't use you blood but some other sick baby can. There are a lot of sick babies here and Ginny wants to hang out with them as soon as possible.

I'd also like to thank whoever it was that came over and mowed my lawn on Saturday. I think I know who it was, but he won't admit it.

Some Changes and Small Progress

So this morning during rounds the team decided to make a few changes to see how Ginny responded. The paralytic didn't work and she continued to try to breathe on her own. She's stubborn and a real fighter. I have no idea where she gets that from. Maybe a little idea.

A few minutes ago she was switched to the traditional ventilator from the high frequency oscillator. Her color immediately got better. So far she has responded very well, but we can't know for sure. The doctors want to see where she is in about 8 hours.

A Rough Night

Last night about 3 am, I apparently woke up and told Rachel that something was wrong. I don't remember this, but she tells me I told her to call Shands. The nurses told us that Ginny was having a rough time. Her blood oxygen saturation levels (sats) had dropped and she needed to have her lungs suctioned. She is not a real big fan of that to say the least. So this morning she is stable, her sats are good, but they had to increase her oxygen level to 85% from 75%. We would really like that number to go in the other direction, but we are still ok for now. The doctors tell me that her oxygenation (receiving oxygen) is doing well, but she is not ventilating (removing carbon dioxide) as well as she should. Another issue is that Ginny keeps trying to breathe on her own, which they think may be working against the oscillator. This morning they are going to give her a paralytic medication that will stop her from trying to do stuff on her own and see if the ventilation issue gets better. The doctor also discussed some treatments in the research phase on some inhaled medications for this condition, but it has only been tried in about 4 or 5 other babies. Today will be a rough day for us. Ginny's a fighter, but she needs to help us fight for her. Thank you to everyone for all your prayers and support.

First Few Days

Ginny was actually due on May 16th. Most babies (90%) are born within a week of their due date, so when she hadn't arrived by Rachel's next OB appointment on the 20th, we weren't particularly freaked out. Well, Rachel was a little worried that Willy would win the pool for guessing the weight at 10 pounds, but we weren't really freaked out. Dr. Delker - Rachel's OB at North Florida Regional Medical Center (NFRMC) - said that things were looking fine and we could wait or we could induce on Sunday the 23rd and deliver on Monday the 24th. We decided that at only 7 days late, we would wait and try to coax her out naturally, but we did go see Dr. Delker again on the 24th. Everything was still looking good, but obviously this couldn't go on forever, so we set Thursday, May 27th as the day we would induce.

Knowing Wednesday would be our last quiet night without the assistance of a babysitter, we went to one of our favorite restaurants in Gainesville, Manuel's Vintage Room www.manuelsvintageroom.com, for a great dinner. Rachel's favorite is the lobster ravioli with the truffle cream sauce. We highly recommend it if you are in town.

Thursday morning we went to NFRMC for the big event. Obviously, nervous and excited are understatements. Apparently we weren't paying attention to our instructions, because when we arrived at 7 am, they didn't have a room for us. They had delivered 8 babies the night before and we forgot to call ahead to let them know we were coming. No worries. We went to Starbucks and then came home until they called us back at about 10. We got settled in our room and I warmed up my repertoire of completely inappropriate humor. Watching someone check your wife's cervix can be pretty entertaining if you know how to do it. Rachel was given Cervidil at about noon and we were told to just chill out. I had no problems with that. By 7 pm, however, Rachel had a real problem with that. The Cervidil was causing some pretty painful contractions at about 90 second intervals, but not dilating at all (maybe 1 more cm). At midnight, she had the Cervadil removed and was given some pain medication so she could sleep, and we would see Dr. Delker in the morning.

Friday morning (May 28th), Rachel was given Pitocin to try to get Ginny to come out and play. Ginny did not respond well to the Pitocin. Each time the nurse (also named Ginny, and a very awesome lady) would increase the dosage, baby Ginny would lower her heart rate, which was not a good sign. They decided to back off the dosage and see what happened. Ginny responded well, so we tried again, and again she was not happy. At about 10 am we decided with Dr. Delker that we would perform a Cesarean at about 2 (immediately following the scheduled C-section at noon). This would prove to be a wise decision.

Some of you might know that I had imposed Liquidated Damages upon the child for her tardiness in the amount of $100 per day, payable on her 18th birthday. By the day she was born she was up to $1200. Since we had to go in to get her, my friend David Weintraub reminded me I would probably have to go after her bonding company. Then I came to the realization that I AM HER BONDING COMPANY. So much for that idea. (Just a little nerdy construction law humor for those of you that get it.)

Rachel went off to the operating room for the C-section a little after 2 pm on Friday. I put on one sexy hairnet, a gown, mask and booties and followed a few minutes later. It's a scary sight to see your wife strapped down to an operating table with a room full of people. Rachel was pretty scared too. Luckily Tony, the nurse anesthetist hooked us up with the iPod speakers in the OR, so Ginny was born to a soundtrack of Bob Marley & the Wailers. By the time we were done everyone was ready for an island vacation - except Ginny, of course.

Ginny was born at 3:21 that afternoon. Right after removing her from the womb, Dr. Delkershowed her to us for just a few seconds, and then handed her off to the neo-natology nurse. She was a blue baby. I'm told that's normal at first, but when she didn't "pink up" right away, we kind of thought something was wrong. Dr. Delker told us that she had the umbilical cord wrapped around her neck twice and that she had a bowel movement in the womb (called merconium). She hadn't been out long (maybe 10 minutes) before she was brought to the special care nursery. They brought me back to Rachel's room to wait for her to get stitched up and said that maybe Ginny would be able to come to the room if she got good color. Rachel was wheeled into her room a few minutes after that, although it felt like an eternity. Very shortly after a doctor from Shands, a neonatologist came in and explained that Ginny was still having trouble breathing and she needed to be transported to Shands very soon. I had to go break the news to Doug and Wendy in the waiting room, which is one of the hardest conversations I've ever had. Wendy was able to come stay with Rachel while I waited to go see Ginny.

Seeing my daughter for the first time was at once a wonderful and heartbreaking experience. She had been intubated, and she had lots of IV's and sensor leads stuck to her. The transport nurses were awesome. We took a wild ride in the ambulance from NFRMC to Shands. Its amazing that some people just won't move out of the way for an ambulance with lights and sirens and horns and a really sick infant in the back. Please, if you hear a siren, get the hell out of the way... it could save the life of someone you love. And for the love of God - HANG UP THE PHONE!

Once Ginny and I got to Shands, she was taken immediately to the NICU Level III. The nurse there gave me a cup of coffee and I sat in the waiting room for what seemed like an eternity. I was the only one there for a while. I felt really lonely and had quite a time trying to keep it together. Eventually my friend Matt made it there, and he was a real hero that night. He's also a doctor at Shands, and he was able to go in and get the doctors treating Ginny to come out and talk to me. I owe Matt big time.

The doctors at Shands are some of the best in the country. Add that to the list of reasons why I'm really glad I live in Gainesville. They diagnosed her with two major problems.

The first is her cardiac problem - Transposition of the Great Arteries (TGA). TGA is a congenital heart defect where the blood vessels that carry oxygenated blood between the heart, body, and lungs are switched around causing oxygenated blood to circulate in one closed loop between the heart and lungs, and un-oxygenated blood to continuously circulate through the body. For us engineering nerd types, its a cross-connection problem complicated by the fact that its inside a 9 pound human. You can check out a lot more information at www.americanheart.org/congenital. The cardiologists tell us that this is something that is serious, but it is fixable with surgery and considerable aftercare. They've been doing this type of surgery on infants for decades.

Ginny's other big problem is pulmonary hypertension. The blood pressure in her lungs is so high that it is restricting the blood flow through those vessels, making exchange of oxygen really hard for her. Right now they have her on a high frequency oscillating ventilator trying to get her enough oxygen and open up the blood vessels so that she can breathe with a lot less mechanical assistance. That oscillator is pushing air that is 75% oxygen (as of this afternoon), but we can't continue to do that much past seven days without risking serious damage to her little lungs. The doctors need that number to come down to 60% or below, or they may have to do a much more invasive and risky treatment called ECMO. If there is something you want to pray about - THIS IS IT.

Ginny is in a big room with lots of other really sick babies. She might be one of the sickest, even though she's one of the biggest. We are allowed to touch her, but not hold her, which is hard because we love her so much. She is very sensitive to light, noise, and any other commotion including changing her diaper or turning her head. If anything bothers her she lets us know by dropping her blood pressure and oxygen saturation levels and generally freaking out the nursing staff. Because she's so sensitive, we've really tried to refrain from touching her at all. We spend most of every day with her and watch patiently as she makes small incremental improvements. We are allowed to bring people in to see her one at a time and we don't mind if you come to visit, but we haven't figured out a way to get it into a workable schedule so there isn't a parade through the NICU. We'll figure that out in the next day or two and let you know.

Our good friend Rebecca Hammond has set up a schedule on the internet for those of you that might like to help us by bringing food so we can maximize our time with Ginny. http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=837bb21b-1aff-46a4-88a1-2b7b9d48bb8a

We really appreciate all the help that many of you have offered and hope that someday we will be able to pay it all forward. We'll try to keep this blog updated with Ginny's progress a couple times a day, and share with you some of the great things that the people at Shands are doing. We love you all, and Ginny can feel the love too...